#untilshecan - An Interview with Kristen Griffin

Team GP2C is made up of runners, walkers, hikers, bikers and swimmers from all across the country. In 2015 alone so far this amazing group has logged over 6,000 miles.

Today we'd like to highlight Kristen Griffin. She runs in honor of her cousin Martilee who suffers from Rett Syndrome. Kristen has run for Team GP2C in our Disney races as well as other races around the country. She was also part of the six-person Ultra Ragnar Team with Sparkle Athletic that raised $54,000 for RSRT, our research partner.

"I will continue to run with GP2C as long as I can run, and until these girls can run along side us."

How did you get involved with GP2C?

My aunt Vanessa ran the Disney Princess Half with GP2C in February of 2013 for her daughter Martilee who has Rett Syndrome. I ran my first half marathon that April as well. I became so inspired by Vanessa's fundraising efforts and doing something so hard for M that after seeing all the pictures and notes of thanks, I decided I wanted to do something for M as well. In June I got married, so M was then officially my cousin! The day we got back from our honeymoon, the Disney Princess Half opened for the 2014 race. I signed up literally within half an hour of getting home because I wanted an opportunity to give back, and GP2C was the only option as their efforts hit so close to home. It was at that race that I really learned what Rett Syndrome can do to a family and why it needs to end. It was also at that race that Vanessa talked me into (in a good way!) completing a half marathon in all 50 states. I decided I'd do it for M.

What inspired you to become an athlete?

I've been an athlete my entire life, competing through high school and college. The real struggle for motivation to continue came after I graduated college and didn't have a coach to expect me to show up and give me direction. I really think that finding GP2C and having Rett Syndrome to fight against came at the right time for me to keep going. I expected to be a "one and done" half marathoner, but now GP2C has inspired me to keep going and do what I can for these girls!

Kristen's inspiration! This is her beautiful cousin Martilee.

What is your favorite part of running for Team GP2C?

My family has grown and I've been welcomed in with open arms! It's so humbling. I've been given a true gift. Not only am I pretty good at running but I ENJOY it! My races are taking me to all 50 states, so I get to meet up with families I've met or ran for, all over the US. I post a photo of what I'm going to wear in a race, and I get so many comments of "thanks for running for my girl" or "my daughter and I wish you good luck!" It's brought me to tears more than once and I love seeing all the words of hope.

What keeps you coming back?

The whole family aspect is amazing. I haven't met nicer or more welcoming people anywhere else. It doesn't matter that some of us can run a half marathon in half the time that others on the team can. We all stay to cheer on the team through the finish. We might see a Flower on a cheek and during the race and get words of inspiration from someone on our team. It's amazing! I will continue to run with GP2C as long as I can run, and until these girls can run along side us.

What would you tell other people that are thinking about joining Team GP2C?

Do it! Do it yesterday! Stop hesitating! These are amazing families you are joining in an amazing fight against a horrible disease!

Share a few lines of your favorite running song at the moment!

I actually don't always run with music. In a race, I hardly ever have music. It's a time for me to escape everything, and sometimes just listening to my feet pounding the pavement is all I need.

What would be a perfect afternoon for you?

Honestly? It would be spent outside, running. I told you I enjoy it! I'd be exploring new trails, stopping every 20 feet to take a photo for my Instagram, so I can share the beauty I get to see with you all!

Share one quote or saying that inspires you to keep going.

"Light can be found even in the darkest of times if one only remembers to turn on the light." Album Dumbledore- Harry Potter and the Prisoner of Azkaban. Yeah, might be nerdy that my favorite quote is from Harry Potter, but that's the generation I grew up in! I love this quote because of its simplicity, and it relates to my Rett Syndrome journey. Yes, it's a horrible disorder that takes away so much from our girls, but when we see their smile it lights up the entire world.


Thank you so much Kristen for all you do to raise awareness and research funds to battle Rett Syndrome. Your energy is contagious and keeps us all on our toes!

Summer Power the Flower Contest!

Summer is filled with so many amazing adventures - maybe you swim, water ski, kayak, surf, hike, or fill your days with summer 5k fun runs??? As you embark on all of these adventure-filled days, we hope that you will keep our girls in mind. Think of them as you tackle that killer wave or do a silly back flip off the diving board - things so many of our girls long to do but can't because Rett Syndrome simply won't allow their bodies to do it.....YET.

We need you to channel that energy, that fun, and all those adventures through our flower to let our girls know they inspire you! and that you believe they will be rockin' their own adventures with you one day soon.

Help us as we #powertheflower and educate the world about Rett Syndrome. We believe that education brings knowledge and the desire to help which leads to donations that will ultimately fund the life-changing research for our girls!

HOW? Enter our contest! It's SIMPLE! and fun!

1. Take photos of your summer adventures - and be sure that our flower is in your picture!
2. Pop over to Instagram to follow us @gp2c and be sure to use the hashtag #summerpowertheflower for your chance to win a $100 Amazon Gift Card.
3. Contest ends August 31, 2015. Winner selected from all submissions at random and announced on September 1st.

Need a flower? For a paper version, print and cut out our flower by clicking the image below. For a digital version you can add to any photo, click here!

#summerpowertheflower
#untilshecan
#rettsyndrome

Hike for Julie

Henry and Bennett with their Appalachian Trail Hike inspiration, Julie

You know that feeling of butterflies in your stomach you get when you are nervous and excited all at the same time? How about that feeling after you graduated from high school and the world ahead seemed so big? And finally, that feeling when you are older and you look around and want to make sure you are making a difference?

Well, have we got a story for you!

Butterflies are building up for father/son duo Henry and Bennett. These two have been hiking together for years and plans to hike the Appalachian Trail are coming true. They leave in just three days on a journey of a lifetime (Monday, June 29th).

Bennett, a recent high school graduate, is delaying his start in college to hike with his dad. Henry is taking five months off of work to tackle the trail.

Their motivation? A little girl named Julie. She is battling Rett Syndrome, a neurological disorder that mainly affects girls. It affects her ability to walk, speak or use her hands. Hiking a trail is out of her reach .... for now.

Henry and Bennett want to be a part of changing that. They hike to push their own physical limits to raise awareness for this devastating syndrome. They hike with the bravery Julie has shown every day in her fight.

Girl Power 2 Cure is honored to be a part of this journey. We are cheering them on, lifting them up every step of the way.

It's not going to be easy. It's 2,189 miles of Mother Nature in all its fury, beauty, and splendor. The trail passes through 14 states and only one in four of those who set out on the journey complete the full distance.

Hiking the trail is equivalent to climbing Mt. Everest 16 times.

They will start in Katahdin, ME with hopes of getting to Springer Mountain in Georgia before Thanksgiving.

To follow their journey, check in on hikeforjulie.org and gp2c.org/hikeforjulie.

We look forward to following their journey and wish them strength, bravery, resilience and joy as they progress. Much like the journey of Rett Syndrome, it is daunting but there is an end in sight if we keep pushing forward.

Show your support on social media with #hikeforjulie! CLICK HERE TO DONATE

9th Grader's Science Fair Project on Rett Syndrome

We love sharing stories like this. Meet Kaylie, a freshman at Pell City High School in Alabama. She was inspired by her little sister who suffers from Rett Syndrome for her science fair project titled: Which genetic mutation type causes the earliest age of onset of the ten most common symptoms of Rett Syndrome?



Kaylie, tell us more about your science fair project on Rett Syndrome. First, why did you choose this topic?
I chose to do this project on Rett Syndrome because of my sister Julie Grace. I did it all for her. After going to many therapies and doctors’ appointments with her, I have become very interested in not only Rett Syndrome, but also genetics. I hope to go to school to become a Physical and Occupational Therapist.

How did you decide on the specific project?
I originally just looked on the Science Buddies website for a project that had to do with genetics. I found one that talked about different mutations in Cystic Fibrosis. My mom showed me the InterRett Output Database. I saw that they had the average age of onset of epilepsy, so I combined that with the Science Buddies project and after a lot of thinking, I came up with my project. “Which genetic mutation type causes the earliest age of onset of the ten common symptoms of Rett Syndrome?”

What was your goal for this project?
My main goal of the project was awareness. I just wanted to put it out there because really only my close friends know about it. Plus it gave me an excuse to talk about it a lot!

Kaylie (far right) with her sisters

What was the most difficult part for you?
I don’t think there was really a hard part of this project. I loved doing it and reading the little stories people would add in about their girl walking or talking! I just found the whole thing very interesting.

What did you learn from the process?
I guess if I had to go back and change anything I would ask for the ages in months because converting each one into months individually wasn’t my favorite thing. I learned so much from this project! I read so many different versions of explanations of Rett Syndrome. I learned so much about it and the mutations.

What are some things you want people to know?
I want people to learn that Rett Syndrome affects 1 in every 10,000 girls and it could affect anyone! I want people to know that the girls are in there and they know EVERYTHING we say or do around them! And I want people to know that early diagnosis is the key because therapies can start sooner and that a cure is coming! I think some good advice is if you want to then go for it! Tell everyone you can and talk their ears off about it if they will let you! And don’t be afraid to ask for help or an explanation because some of the scientific stuff can get pretty confusing!

Kaylie's mother, Melanie, shares "There are times I let myself think back to the days before Julie Grace’s diagnosis and it seems like a different lifetime. But in the year and a half since Rett Syndrome entered our lives, our girls’ love for their sister has shown through in everything they do. I’m very proud of all four girls: Julie Grace for her strength and perseverance, her older sisters’, Kaylie and Emily’s,  love for her and their constant fight to make sure that everyone knows about Rett Syndrome and her twin sister, Jerri, for keeping us all a little more “real.” 

Kaylie's project won locally and went on to the regional competition at UAB in Birmingham, AL where she was awarded First Honorable Mention in her class. She received the Surgeon General's Award of Excellence for her presentation. Congratulations Kaylie! Thank you for educating others about Rett Syndrome.

Team Zoe Superheroes!

There's something special that happens when Team Zoe steps out to raise awareness and funds for Rett Syndrome.  As you can see from the photos above, this group (led by Zoe's mom Amy) moves mountains for this special little girl and her fight against a syndrome that has stolen her voice and use of her hands as well as her ability to do so many things a little girl should be able to do: dance, run, skip and play.

Girl Power 2 Cure recently awarded our first annual "Superhero of the Year Award" to this great team and their city, La Porte, IN. 

Here is a photo of Zoe and members of the team with Mayor Milo. The La Porte community has played a vital role in Team Zoe's successful fundraising. They have helped raise over $40,000 and rank as the number one city for our Facebook fans and website visitors. 

photo by Matt Fritz

Click here to read the front page story from La Porte's local paper.

We can't thank Team Zoe enough for their commitment, passion, creativity and positive impact on the Rett Syndrome community and our organization.

Claire Oliver Joins the GP2C Board of Directors

Claire Oliver, new member GP2C Board of Directors

Girl Power 2 Cure is excited to announce the addition of a new member to our Board of Directors.
Claire Oliver, an elementary school administrator, has over 17 years of experience in education and a strong passion for non-profit work. Claire shares that learning about Rett Syndrome and all that GP2C is working towards accomplishing is what inspired her to get involved. "I have a deep passion for helping children receive the education they need and deserve, and love the work Girl Power 2 Cure is doing, especially with Rett University."

Claire adds that seeing how much Rett girls need advocates to ensure they receive quality education is what motivated her. She says, "I’ve seen firsthand just how hard these girls work. When given the right education plan and environment, they have so much to say. I want to be a part of changing the way the world sees these beautiful girls and all they CAN DO!”

Additionally, Claire is passionate about endurance sports - something she has been involved in extensively for the past 14 years. She is an avid runner, as well as a triathlon and marathon coach since 2003. She has coached over 1,000 runners to the finish line and holds an RRCA (Road Runners Club of America) certification, USAT (USA Triathlon) coaching certification as well as certification by Dave Scott as a triathlon coach.

Claire lives in Irving, TX with her fur family and in her spare time enjoys running, sewing and volunteering her time for worthwhile causes.

We look forward to working with Claire and know her educational and endurance training background will be an incredible asset to two of our biggest programs: Rett University and Team GP2C.